Saturday, September 28, 2013

Mom and Jeff and Dash

Ann found this piece of paper when she was cleaning some of my mother's things this week. She must have written it after she had her brain surgery back in August of 2005, but it was kind of noteworthy for me for a few reasons. One, because it's been a long time since I've seen my mother's handwriting normal. Two, because even in what ends up being a pretty sad note, some of her humor/attitude comes across. For those who can't see the image or read the writing:

messed up at work.

I repeat myself several million times a day.

I can remember some things after the tumor removed -

Will I be this way forever? (probably)

I lose stuff in the house - sometimes I can find

The latest this could have been was early 2006. At that point, she was still at the police station, would have gone back to work from the surgery, and I know things weren't going so hot. I had probably moved out by then.

Ann found it this week when searching for some clothes for Mom and cleaning up her room because we had to admit her to a short term geriatric psych ward to even out her meds and get her back into some sort of livable daily routine again. She started at an adult day care facility three times a week, and within a week of attending she made a really, really bad turn. I don't talk about my mother's situation much these days on the blog or on Facebook or much of anywhere else these days because a) I hate being a burden and b) more importantly, it's just really difficult. It's sad and unfortunate and difficult, and as good as she is with Dash, she's been an absolute beast for a month now, and she wasn't especially pleasant to begin with.

To make a long story incredibly short, she just had this really brutal turn where she would attack my father, kick things, yell incessantly at everyone, wander around screaming how she wants to "go home" (her general "things aren't okay" trigger), and so on. We thought the day care might help things in the sense that she'd see professionals daily and such, and it has, but we also hoped it might even her out a bit when she's home with us. Instead, it coincided with this turn.

Ann's pretty much the main contact with the people there. Every family gets a social worker, and our social worker is especially interested in us because Dash brings Mom to the center with Ann every morning while Dad and I are working. We're effectively the youngest caregivers in the program by a longshot, my mother one of the youngest people there. That we have a baby in the house with a (relatively at 58) young Alzheimer's patient means that there are different issues to worry about, from cleanliness to having a positive atmosphere in the house to simple safety issues in the event Mom gets aggressive. It's a balancing act that they're acutely aware of.

Anyway, we've been dealing with two weeks of Mom at her absolute worst. Her yelling is as such that even Dash is noticing it (but, to the little trooper's credit, never really reacts beyond curiosity), and the medicine that they've been giving her to help with the delusions and the anger and the lack of sleeping simply isn't working. A week from last Tuesday, she was up at 4:30 in the morning trying to figure out what to do (and later got up at 6:00a to yell at the kids at the bus stop), and on Wednesday of this week, was up at 5:30a for good. Since that's when Dash wakes up (and a post about Dash's sleeping habits is coming...eventually), Ann sat with her while I grabbed a few more minutes of sleep. Ann, Mom, and Dash trekked to the center, and Ann laid out the last few weeks to our social worker, and by 3pm that day, I had to make the call to admit her to a short-term psych facility, because the meds aren't working right and the center is concerned for all of us and because we're basically "a family in crisis."

Ouch.

It's been exactly two years since Ann and I moved back home with my parents to help with Mom. It hasn't been easy for a variety of reasons, and some of you know just how bad certain aspects have been across the board, others have merely gotten a hint of my mother and get the basics, and that's fine, too. In a lot of ways, home life is like a prison when you have someone with Alzheimer's. We had to make the call to never leave her home alone shortly after we moved in, and she lost vehicle privileges very shortly after that. It's been a semi-progression ever since, although it's more like a staircase where you have a steady thing and then a major dropoff - one of our doctors at the center described it as such and it fits my mother perfectly. Either way, it means we can't leave the house together without someone else taking Mom, it means keeping one ear to the ground at all times in hopes that she stays in bed after going to sleep, and it means not getting much in the way of restful sleep at night in the event you're asleep and she's not. It means basically everything you do going unnoticed and often punished - you don't get gold stars or compliments for keeping your mother alive, few around you when you're in your 30s fully understand and appreciate the difficulty the situation presents, and my mother basically resented me for it anyway - "why can't I go out on my own," or "where's my car" or anything else. Then it becomes more difficult to bring her places, because people not like her (minority, overweight, older) become things of amusement for her toddler brain with near-elderly experiences. Or you worry about losing her. Or you worry about people taking her friendliness the wrong way. Because, at the root of it, a lot of humanity are jerks about things they don't understand, and that's something she carries with her as much as anything else.

So for two years, we've rarely seen our friends together. We've become detached from a lot of the things and people we love, and now there's a baby. The baby creates the interesting wrinkle for us in that, in a lot of ways, Ann and I have been "parenting" for a couple years now. Cognitively, it's almost as if Mom and Dash are going to pass each other in opposite directions at some point, assuming my mother makes it that long. We've often joked amongst ourselves that Mom is like a toddler that isn't actually learning in many regards. It's not too far from the truth, if you can believe it. Most of our friends are amazingly good about it, and are as helpful as they're able to be, and it's always appreciated even though it's not easy.

So that brings us back to this week. I said in an early entry that being able to take Dash from the nursery was my first "I'm a dad" moment. In a way, having to make the call to put my mother into a short term facility was my first "I'm an adult" moment, and that's with the knowledge that I've gotten married, had multiple mortgages, have a child, and having to make that decision...that's a lot. I can't say I've been the greatest at coping with my mother's illness, but I wasn't at my best this week after that. Having to rush up to the hospital right after work to get everything straightened out, having to be next to someone in the emergency psych area who headbutted his own mother in a fit of rage, then visiting her last night in a ward with people who can't keep their clothes on or seem completely out of it and yet don't seem to be that far off from where my mother is cognitively? That's a punch in the gut. Visiting my mother and having her not seem to care that she's in a psych ward, not especially caring that I'm there, seeming perfectly okay with the situation as a whole because, well, that's about the extent of her coherence? Wow, does that put things into perspective.

So much of how I want to parent Dash comes down to how my mother treated me. She embraced that I was a "little adult" in a lot of ways, encouraging me to try new things and read whatever books I could get my hands on and answer whatever inane questions I had. That my mother was really sharp and bright and with it makes this a lot more difficult, because you can often see flashes of her trying to figure out what's going on in her broken brain. This week, though, was when it really hit me that Dash is never, ever, ever going to know the way my mother was first hand. I always held out hope that she might hold out long enough where they could have a few brief moments, like I did with my Pepere. That's clearly not going to happen, and, given the trajectory of the disease, he might never actually remember her period. All he'll have is our memories - memories Ann never got to make because she was already in weird shape when Ann came around in 2004, and memories I'm desperately clinging to while the thoughts of who she is today melt into the ones I already have. The paper above? It's maybe the saddest thing of her's I've seen since we moved back here, but it really brought back a flood of stuff about Mom that I had forgotten - her little lists, her way of writing things out to figure them out, that there was a time where she was with it enough to actually tell me to live my life and not worry so much about hers.

Mom's in the facility now. She won't be back until Wednesday the earliest, and there's a nagging feeling that she might not be back ever. If she does come back with us, it's becoming quite clear that we're really on borrowed time, and that might not be a bad thing. The doctors at the center have said, in veiled ways, that we might be doing more than what should ever be expected of caregivers period, and it's been implied a few times that her condition two years ago, never mind now, would have qualified her for more help than we're asking for now. But there's a lesson with Mom that also exists as a lesson as a parent for Dash - that the best you can might not be good enough, and even if "not terrific, but competent" keeps someone alive, it might be best for everyone to look around a little differently. Dash is becoming more independent and aware by the moment, and Mom more dangerous. It's not healthy for Dash to be around someone that negative and awful when we have options available to us, and it's not healthy for Mom to be stuck with people who just might not be able to give her what she needs anymore. I don't know, but this week has been a lesson nonetheless - if we would tailor Dash's education, childhood...life to his physical and mental needs, why wouldn't we do the same for Mom.

Until then, we have to keep on keeping on. If my mother's final gift to me is a sense of perspective in how to deal with my own kid, I'm going to do my best to accept it and use it. It's what she would want, after all, even if we're having a good old fashioned cry about it along the way.